Embracing Hope Shaping recovery for young adults following psychosis: Experiences and insights from a Dutch recovery centre, The Windroos.

By Corry Punch-Venneman and Maurice Punch

Embracing Hope is a work recalling a journey involving a special kind of love, courage and hope and an unsettling account of trying to cope with a system that initially does not even recognise parents as relevant: and to this date only grudgingly seems to admit them as stakeholders. The book clearly shows that the dominant spectrum of services available for families dealing with a loved one who has been through a psychosis – the ‘condition’ for them – focuses primarily on diagnosis and institutionalised treatment. The authors illustrate that recovery, rehabilitation, adjustment to a new way and route in life (rerouting) are a dynamic and long-term process.

The story of their learning the hard way and with only little encouragement is an inspiring and at times depressing story. It starts in the early nineties, when as parents they were confronted with the condition, and with how little the “system” then had to offer young people, parents were supposed to assume responsibility for administering the prescribed pills. Little did the Punch’s realise that this would become almost a full-time pre-occupation for them both and for one of them an occupation at one stage. Their discovery, along with several others, of ‘what works and is appropriate’ becomes even more impressive if you realize that they embarked on this journey before the internet and world wide web – with all its forums and lowering of information thresholds – became a feature of working and of information seeking.

The first chapter Beginning of the journey is a thoughtful analysis of looking for clues and the apparently inevitable confrontation with the rigidity of institutionalised psychiatric treatment which seemed like a rubber wall for those seeking an alternative. This section lays the foundation for a rare participating witness section of parents dealing with and responding to the change in personality of their child. Following diagnosis and inevitable medical treatment, young children and their parents are told they face a bleak future. In this the children appear to be almost written off and the parents shoulder a burden of care, that can easily extend beyond their lifetime even though the book showcases that this does not have to be the case. The summary ‘… there is a great deal of debate about the condition, with considerable debate about what it is and how it should be treated.’ suggests that parents will be faced with professional opinions that they may not fully understand or might not always be that helpful for their parenting responsibility or for the rerouting of their child.

In the final chapter ‘Conclusions’ they restate their case, rephrased in questions here:

Where is the major document or meta-analysis of decades (emphasis added-rgk) of experiments dealing with the condition in layman’s language for a broader audience,(= who are not Medical Health professionals).

What is so difficult about treating parents as allies?

Although there is a paucity of working examples on recovery, rehabilitation, re-integration, re-routing life for young people with the condition, how can experiences, pilots and experiments be recognised and go to scale? (become generative).

What paradigm shift is needed and who are the leaders who will rescue recovery from behind the walls of clinics and hand it over to the primary stakeholders: young people and their parents or family members.

How can we go beyond the four letter word Hope?

It is impressive to realise that the Punch’s, like others, went through all the stages they describe in their book, and you get glimpses of what this must have meant or how it triggered them. Nowhere does their individual struggle become the dominant tone or does the book turn into an ego document of lamenting and complaining. Their quest for a better future for children affected by the condition appears to have been relentless. This journey resembles looking for the Holy Grail yet while there are only a few fellow travellers and the odds are at times against them, there is no time for complaining or dwelling on the past. From the beginning it is clear that they will not settle for the existing or dominant treatment. They want a route of life that may be different and their working hypothesis, starts with the rejection of a box of pills, to providing a ‘safe haven’ using computers and developing an educational and accompaniment approach that needs to be tailored to every candidate. Being there, being present as a parent, care provider or ‘rerouter’ is a pre-condition for any success! The reader is taken through a succinct account of the development of the ‘Windroos method’ and a number of small stories illustrate the range of predicaments faced. A true example of Robert Quinn’s Building the bridge, as you walk on it! These anecdotes are great material as they give an insight in the demands made and show the need for patience, dedication and crafting the ‘right’ approach to support and framing life anew.

The book is a rough diamond that would benefit from further refined editing, as there is some repetition and it is not always clear, who is the first person speaking or writing as the ‘I’. This diamond could well be used and polished in different educational settings, such as for: Mental Health Professionals, psychiatrists, specialised MH-nurses; in Social work and Workplace reform. The latter as it is a real life story of what it takes to provide a ‘safe’ working and learning environment. Beyond that use, this book illustrates the value of the growing body of professional parent literature and also serves of the arduous uphill battle for conditions that are long-term and seldom seen as sexy or ready for a hyped up attention.

Back Cover Embracing Hope

My hope for the book is that Punch’s manage to combine the Beginning of the Journey and the Conclusions with the detailed footnotes and references into a peer reviewed article for an academic MHS journal and that the book forms the basis for an RSA Animate by the Royal Society for the encouragement of Arts, Manufactures and Commerce. I admit that I am biased as the authors of this book inspired me to treat my son born with congenital heart defects always as a person, as a child and never as a ‘patient’ and they illustrate to me the power of parental love and engagement. From that experience I can testify that there are some examples of medical staff actively working with parents, sadly this appears to be institution specific. Some parents become almost overwhelmed by coping with the condition and the Punch’s were fortunate in being able, with supportive others, to spend time on their quest to pursue recovery on behalf of the young people and their parents. Their courage, dedication and results deserve more attention!

How to connect

Barsik, is a domestic Russian cat that wins a local election. The description will not fail to make you smile. The other week I attended the launch of Activism, Artivism and Beyond by Yannicke Goris & Saskia Hollander, presented by PARTOS, the association of Dutch Development Organisations and The Broker […]